Christmas wishes

Thank you everyone for your kind messages. It feels impossible to explain how we are doing. We miss Samuel so much. We miss looking at his beautiful blue eyes and long fluttery eyelashes. We miss cuddling up to him and holding his soft, squidgy hands. We miss looking after him. Our world will never be the same again. For the last 4 years our lives were devoted to Samuel. Not only were we his parents, but his nurse and carer too. Caring for him, managing his condition, dealing with professionals, doctors, support services, arranging appointments, organising his equipment etc was a job in itself (the best job in the world). And all that is now gone. All his equipment and even our van, which we had for Samuel, has had to go. You lose a special child like Samuel and the hole left behind is unimaginable.

Everyday our hearts break all over again. But we do have our little ray of sunshine. Toby. Samuel’s little brother is doing all he can to heal our hearts and make us smile. This Christmas will be his first and we are keen to make it as special for him as possible, but it hurts to know that our boys never had one Christmas together. But we will have Samuel’s candle burning at our Christmas table and he will be with us I’m sure. The future feels daunting without Samuel, but we are determined to always remember and celebrate him and to make sure his little brother grows up to know what a wonderful boy his big brother was and will always be.

Please remember Samuel this Christmas and all the brave, special children near and far away who have to endure so much every single day. Remember wonderful places like Julia’s House, who were such a crucial part of our world when Samuel was here and cared and nurtured him after he passed away and continue to hold our hands even now. Remember to give your loved ones an extra squeeze this Christmas and start 2015 remembering what makes this world a wonderful place, Samuel’s two favourite things, love and cuddles.

Recent ramblings

WHAT DOES THAT MEAN?

NICU – Neonatal Intensive Care Unit (Sam spent 8 weeks there)
MIDAZOLAM – Samuel’s emergency medicine
JULIA’S HOUSE – Hospice which provides respite and play therapy (and lots of cuddles for Sam)
KETOGENIC DIET – Special diet which can help epilepsy
GASTROSTOMY – This is a button put into the stomach and all feeds and medicines can be given through it
CHLORAL HYDRATE – Medicine Samuel has at bedtime to help him sleep
SATURATION MONITOR (SATS MONITOR) – Used to monitor heart rate and oxygen in the blood
NASOGASTRIC TUBE (NG TUBE) – Tube that goes into the nose and down the throat and feeds and medicines can be given through it